I write as an outlet, as two of our children battle cancer, positive for Li-Fraumeni Syndrome. I cannot say how often I have heard the phrase, "I cannot even imagine..." but hope to give a glimpse of what this is like...and to reassure you that it is not all bad, despite the challenges.

Thursday, February 5, 2015

Visual art and the impact of seeing it all

As another load of snow landed at my house overnight, I am not entirely sad that I cannot leave today. I am waiting for a delivery of Interferon, which is horrendously expensive and requires a signature, despite the fact that there is no street value to these drugs. As the snow is piled up waist deep along the sidewalks, house arrest is not exactly viewed as a punishment.

It is a pause that I am having today. I am taking a break from the work that I have been doing, both at the hospital, as well as for our non-profit. I am reasonably caught up on laundry and feel indulgent this morning, letting the words leak out of my head.

A few weeks ago, I began an art project, which evolved into a sort of art therapy. With a bit of medical quiet, I took a visual journaling class with Lauren, as a special time to connect with her. I have been feeling pressure, to cram in these sorts of good things, to prepare the kids for college, to do the work that I feel passionately about, to find a paying job... The list seems endless and overwhelming sometimes. Cancer has required a great deal of our attention, and it has not often been out of view, or for very long, evidenced by our Christmas march through radiology and surgery.

To be honest, this pressure and constant medical interruption is incredibly frustrating. Even in the 'quiet,' there is much that needs to be arranged, planned and organized. I am not complaining about the quiet, believe me, but I think that few understand what is involved.

Anyway, I appreciate art, but generally consider it a spectator sport. Dan is visually imaginative, and I generally defer to his efforts in photography, graphics and every manner of design. I have no regrets about this, because his creativity is no match to mine. However, after taking this art class with Lauren, I was inspired. I explained to her that I was going to make a collage of sorts, to represent the past several years of our life in the rabbit hole--the good, the bad and the ugly. I have things that are fair representation of each: x-rays, pathology reports, photos with friends, words of support. There are things that represent both the hardship, as well as the help.

Not quite understanding, Lauren asked if I was going to cover a canvas in glue and dump the contents of my hospital suitcase onto it. Well, sort of. I had a box of 'cancer memorabilia,' for lack of a better term.

I worked through the box, looking over the various items, each that triggered specific memories for me. As I spread it all out, and selected the most important things, the sheer number of visual representations of our story kind of hit me. I went out and bought a second canvas.

Evaluating the different bits, I was struck by how dark some points were. And how lonely. And how filled with despair. But that in those same moments, encouraging words would come, or a friendly face would appear. In our struggle, we found connection. From our isolation, we found a much bigger world.

I am have been frustrated with our lot of late, because of the ways that cancer and that the realities of LFS hold me back. I have felt limited, inadequate and unable to be the person that I would like to be, in many, many ways. It has been hard.

But as I look over my art therapy project, my gaze is drawn to a hand crafted card that Brent's nurse gave to me at our lowest point, when we had two children in the crosshairs of cancer.

What cancer cannot do

Cancer is so limited...

It cannot cripple love.

It cannot shatter hope.

It cannot corrode faith.

It cannot destroy peace.

It cannot kill friendship.

It cannot suppress memories.

It cannot silence courage.

It cannot invade the soul.

It cannot steal eternal life.

It cannot conquer the spirit.

Cancer is so limited. I really like this.

And when I notice that the vast majority of the photos around this card are of our smiling family, even when some are bald, or hospitalized, I believe it. Cancer truly is so limited. And if cancer is that limited, then maybe I am a bit less limited than I sometimes feel.

1 comment:

when you talked about the weather, it made me think of my bittersweet experiences with the snow. from the snow storm the one day and getting stuck in the driveway to no snow and ice (i broke my snowscraper from the ice) to the one nice day where the snow melted and i fell in the mud lol. you stay so busy, dont know how you do it. that class sounds fun, happy you were able to spend time with your child. your blog was needed especially that last part about the card. thanks for the updates.

About Me

Our pediatric cancer adventure was complicated by the discovery of a genetic mutation (Li-Fraumeni Syndrome) which predisposes two of my children to all forms of cancer. While Brent, now 16, battled osteosarcoma (bone cancer), we found that Lauren, now 13, had a rare brain tumor. Since our initial problems in 2011, Brent developed two subsequent cancers (Metastatic melanoma and AML--a leukemia that required bone marrow transplant) and Lauren had a second brain tumor removed.

I share both the challenges and the blessings of this life, pretty freely.